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Genetics & Law

The road of genetics

“We have discovered the secret of life”: more than 60 years have passed since Watson and Crick announced the discovery of the structure of DNA to the world.

During years, genetics moved steps forwards, in particular with the completion of the Human Genome Project in 2003. Since then, we assisted to a drastic decrease of costs for performing tests and to an increasingly deeper – though still limited – understanding of articulated and complex mechanisms. Till the most recent promises of gene editing.

The advantages stemming from genetics’ advancements rely on at least three factors: first, the accurate identifying value of genetic information; second, the predictive value of DNA analyses, able to provide users with information about the future health of an individual; third,  the shared nature of genetic information, pertaining to different people belonging to a same biological group.

Improvements are both qualitative and quantitative: genetic analyses which, until a few years ago, addressed one or more specific genes with the aim of answering  a defined clinical question are nowadays moving towards the application of wide and high resolution screenings of the whole genome. The new techniques are potentially able to provide information on virtually all functional, protein-coding variants in the genome, including most variants known to influence risk of human diseases and traits. Furthermore, these emerging instruments generate an enormous amount of raw data that needs to be selected through complex bioinformatics analyses.

On the flipside, rights and interests can be jeopardized by genetics’ developments: the right not to be discriminated on the basis of genetic information, the right not to know or the right to decide how much and when to know, the right not to have personal data used and shared against individual intentions. More general considerations can be relevant as well: the heavy charge that new sequencing techniques can put on national systems, not only in budgetary terms, but in relation the profiles of responsibility in storing,  managing and eventually communicating relevant information as well.

All of the aforementioned aspects find different declinations into the many fields of application of genetic analyses and require law to identify a proper balance between hype produced by science and unhelpful over-precautionary attitudes.

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